We ended up having 5 showers a day, as a nurse come in last night and told us that she had seen many nasty burns from this chemo and to be safe then sorrow we were up at 2.00am to have a shower. Brody didn't like it one bit, and stood there crying, nearly brought tears to my eyes but i have to be strong for him. My brave little man then went straight back to sleep.
His skin is very dry and has red marks on his arms, his skin feels quiet warm. We have started to use a oil wash to wash him down with it
Brody was a bit aggressive today as he bite me, hit me and just been destructive. He sometimes gets like this when he is not feeling well, as he can not tell us, so he lashes out instead.
The doctors came in today and told me that his white blood cells are now at zero, so we can expect high temps and mouth sores the next couple of days. We still have to give him the 5 showers as well for two more days.
Brody starts the new heavy dose chemo tomorrow called Cyclophosphamide. It will run for two days. So we are starting to get closer and closer to the big day. But i am not so much worried about the transplant as its just like a blood transfusion, its the weeks after that everything can happen, as his body is then working over time to heal itself from all the chemo and radiation.
Luke will be down tomorrow as he has a clinic visit on MOnday, he will be staying with Grandma and on the transplant day he will have a bed at the hospital as well. Luke is my other superhero as he is giving the best gift ever and is so brave to do this.
Saturday, July 17, 2010
Friday, July 16, 2010
Started the heavy duty chemo
Brody started his heavy duty chemo today. It is called Thiotepa and it only takes hour to give him through his cords.
Side effects- nausea and vomiting, dizziness or headache, pain, high fever, drowsiness, confusion, mouth sores, liver damage, darken areas of the skin, skin rash, infertility and also burn areas of the folds of the skin. Therefore having to have the 4 showers a day and wipe down at night.
He took a bit to get him to have showers but once he is in he loved it, as he shakes his bum and says oh, la, la....!!!. Thanks again to ABI for the tools to get him to comply with things.
He has slowed down alot today but still is happy and wants everything. He is so amazing to watch him go through all this heavy duty stuff and still battle on. He is so brave and i love our little story's together we tell each other before we go to sleep.
Our family also got some sad news as my Pop's twin sister is in hospital as she had a stroke, our prayers and thoughts are with Aunty Alison and all our family members in Melbourne.
Also Pop's special friend Daphne past on at the age of 95, so our thoughts and prayers are with her and her family. She will be sadly missed as Daphne and i shared the same birthday and as she was a inspiration to me. xoxox
Side effects- nausea and vomiting, dizziness or headache, pain, high fever, drowsiness, confusion, mouth sores, liver damage, darken areas of the skin, skin rash, infertility and also burn areas of the folds of the skin. Therefore having to have the 4 showers a day and wipe down at night.
He took a bit to get him to have showers but once he is in he loved it, as he shakes his bum and says oh, la, la....!!!. Thanks again to ABI for the tools to get him to comply with things.
He has slowed down alot today but still is happy and wants everything. He is so amazing to watch him go through all this heavy duty stuff and still battle on. He is so brave and i love our little story's together we tell each other before we go to sleep.
Our family also got some sad news as my Pop's twin sister is in hospital as she had a stroke, our prayers and thoughts are with Aunty Alison and all our family members in Melbourne.
Also Pop's special friend Daphne past on at the age of 95, so our thoughts and prayers are with her and her family. She will be sadly missed as Daphne and i shared the same birthday and as she was a inspiration to me. xoxox
Thursday, July 15, 2010
Last day of full body radiation!!
Today was Brody's last day of full body radiation and again he went really well. His head is red, which makes his hair look blonder and his body is a bit pink. The ladies and men at the radiation clinic all loved him and gave him some balloons and a care flight bear for his birthday and last day of radiation. Thank you to the staff at Westmead Radiation hospital for your support and understanding of Brody's needs.
Our lovely nurses again stocked Brody up with anti sick meds and he wasn't sick at all. He was more active today as we painted and played with bubbles and played hide-n-seek in his room. Its wired how first day was bad then as the days pass he gets better, thought it would have been the other way around.
He is still having feeds during the night and also his fluids and meds through a drip so there is cords every where, which makes it hard for shower time. I am so proud of him as he is so good in the shower now. Thank you to ABI for showing me the tools i needed to get Brody use to things and to do things, as he is coping so much better now then before. Thanks again.
Tomorrow we start the new chemo, where Brody has to have the 4 showers a day. Its going to be a wet and busy couple of days.
Wednesday, July 14, 2010
Better Day!
We had the same busy day as yesterday but this time Brody had sickness meds all in his system and ready to go. This made a big difference as he wasn't sick at all today. His skin is a bit pink and he looks really flushed in the face still.
All radiation went well and they have started more new meds, but no other new news. Brody is coping really well, with everything. One more day of radiation to go.....
Today my thoughts were with my family and of my sister Sonya as today was 2 years since she past. We miss her dearly and the pain is still strong. We loved her with all our hearts. My poor mum and dad have had so much to deal with these past years. They are my inspiration and i love them. xoxoxox
All radiation went well and they have started more new meds, but no other new news. Brody is coping really well, with everything. One more day of radiation to go.....
Today my thoughts were with my family and of my sister Sonya as today was 2 years since she past. We miss her dearly and the pain is still strong. We loved her with all our hearts. My poor mum and dad have had so much to deal with these past years. They are my inspiration and i love them. xoxoxox
Tuesday, July 13, 2010
Busy, busy day!!!
ok, its 8.00pm and its the first time i have been able to take some time out and do something, while Brody is watching a video.
Brody woke up at 2.00am this morning and turn on the Tv and played DS, then he feel asleep again and the nurse turned it off, therefore i was up most of the night with the nurses coming in and Brody waking up.
I then got up at 5.30am to get ready for our day, while Brody sleeps in. At 7.00am the man come to take us to radiation. The radiation took an hour and we got back to the room at 11.30am. Brody then started to vomit and vomit and vomit. They gave him something for it which helped him have a half and hour sleep before we had to go back again. So i was busy all day washing out sick bowls and holding them up and getting tissues to wipe his mouth. It was really hard to watch him go through this, and its not even that bad yet.
We went back to radiation and everything went well, but as soon as he woke the vomiting started again, again and again until they gave him something again for it. He has only eaten 4 Jatz biscuits all day. This is not like Brody, normally he eats like a horse.
We got back to our room at 7.00pm and then i had to give him a shower and get him ready for the nurse to give him all his meds. They are also giving him a transfusion which he has never had before, it is called Intragam, its a blood product and helps to fight infections. Brody's levels are very very low of this product so they have to give him some more tonight also his normal feeds through the nose.
So we are both very tired and worn out and cant wait to get off the computer to go to bed. We still have 2 more days of this and then the next lot of days is 4 showers a day for 4 days, which again will make me not have much time to talk or message people.
Brody woke up at 2.00am this morning and turn on the Tv and played DS, then he feel asleep again and the nurse turned it off, therefore i was up most of the night with the nurses coming in and Brody waking up.
I then got up at 5.30am to get ready for our day, while Brody sleeps in. At 7.00am the man come to take us to radiation. The radiation took an hour and we got back to the room at 11.30am. Brody then started to vomit and vomit and vomit. They gave him something for it which helped him have a half and hour sleep before we had to go back again. So i was busy all day washing out sick bowls and holding them up and getting tissues to wipe his mouth. It was really hard to watch him go through this, and its not even that bad yet.
We went back to radiation and everything went well, but as soon as he woke the vomiting started again, again and again until they gave him something again for it. He has only eaten 4 Jatz biscuits all day. This is not like Brody, normally he eats like a horse.
We got back to our room at 7.00pm and then i had to give him a shower and get him ready for the nurse to give him all his meds. They are also giving him a transfusion which he has never had before, it is called Intragam, its a blood product and helps to fight infections. Brody's levels are very very low of this product so they have to give him some more tonight also his normal feeds through the nose.
So we are both very tired and worn out and cant wait to get off the computer to go to bed. We still have 2 more days of this and then the next lot of days is 4 showers a day for 4 days, which again will make me not have much time to talk or message people.
Monday, July 12, 2010
Yet another blood transfusion
Today was pretty quiet, as not much happened. Brody is doing well. His counts were low so he had another blood transfusion to add to his list of many. They have continued feeds through out the day and he is sit eating alot of food, its like when he was on steroids but he is not. LOL
Brody is less active as he has played DS and watched Tv all day. He punched a nurse in the stomach really hard today, but he was only playing around this time. I felt so bad and Brody did say sorry. Busy day tomorrow, its all a go................
My thoughts and prayers are with a friend from the hospital as her daughter only has minutes to days of life left. Its really hard seeing her go through this and i wonder how i will cope if something happens.
As Brody has been in my life since he was born. Brody has had problems since day one and needed extra support and alot of work day to day. I have been there though everything and all his milestones, so i wonder what will happen after????? No child or parent should have to go through loosing their child.
My friend feels the same way and i really feel her pain, so please just have a thought about people that are going through this experience and give your kids a hug and tell them you love them. xoxoxoxox
Brody is less active as he has played DS and watched Tv all day. He punched a nurse in the stomach really hard today, but he was only playing around this time. I felt so bad and Brody did say sorry. Busy day tomorrow, its all a go................
My thoughts and prayers are with a friend from the hospital as her daughter only has minutes to days of life left. Its really hard seeing her go through this and i wonder how i will cope if something happens.
As Brody has been in my life since he was born. Brody has had problems since day one and needed extra support and alot of work day to day. I have been there though everything and all his milestones, so i wonder what will happen after????? No child or parent should have to go through loosing their child.
My friend feels the same way and i really feel her pain, so please just have a thought about people that are going through this experience and give your kids a hug and tell them you love them. xoxoxoxox
Sunday, July 11, 2010
Popped the blister!!
Today the doctor's come in and had a look at Brody's ear. They decided it so probably from radiation but they would pop it and take a sample just in case. Brody was very brave as he picked a prezzie from his brave bag while the doctor popped the blister. He is my superhero!!
Because his counts and immune system are going down earlier then most children before transplant they will start some new meds to prevent chicken pox and other virus today.
Otherwise he is still doing well and playing games, DS, colouring, Tv and more. He is eating lots and is cheeky to the nurse.
Early to bed, for us as i am getting so tried from the stress and worry of everything, by 5 o clock i am ready for bed but still have to shower Brody and get him ready for his feeds and meds.
A huge thank you to Grandma and Grandpa for looking after LUke and washing Brody and my clothes and bringing in everything. We couldn't have did it with out them. They are the world's best parents, have always been there for us. xoxox
Because his counts and immune system are going down earlier then most children before transplant they will start some new meds to prevent chicken pox and other virus today.
Otherwise he is still doing well and playing games, DS, colouring, Tv and more. He is eating lots and is cheeky to the nurse.
Early to bed, for us as i am getting so tried from the stress and worry of everything, by 5 o clock i am ready for bed but still have to shower Brody and get him ready for his feeds and meds.
A huge thank you to Grandma and Grandpa for looking after LUke and washing Brody and my clothes and bringing in everything. We couldn't have did it with out them. They are the world's best parents, have always been there for us. xoxox
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